Upholding the ADA: Living in the Community

Everyone on the CES Waiver, all of you who enjoy having your loved one living near to you instead of in an institution, & providers who support waiver services:

The ability to live freely in the community has been questioned, according to this article, by a top official with the US Department of Health and Human Services, enough to alarm a group of Congressmen. They formed a bipartisan group and took action.


“The lawmakers said they were told that Lazare said she believed the Supreme Court came to the wrong conclusion in the landmark Olmstead v. L.C. case, which affirmed the right of people with disabilities to access community-based living, and that she prefers segregated and institutional settings. In addition, Lazare reportedly said she believed that a federal Medicaid rule outlining what types of settings qualify as community-based should be revisited, according to a letter from Reps. Jan Schakowsky, D-Ill., Gregg Harper, R-Miss., and Jim Langevin, D-R.I.”

Even when things are quiet in the news, someone in power is thinking these things. Maybe they want to save money, or possibly they think less of people with disabilities. Some in power think they have the means to change these protections. We need to always be communicating to our legislators why we want to live in the community or why we want our loved ones out in the community instead of institutions. We need to know our rights and assert them!

Laws that protect people with disabilities

The ADA National Network

Take a moment to make our Congressmen understand how much living in the community means to us. They are the ones who would have to fight a battle that threatens the ADA.

Contact our Arkansas Congressmen!!

Contact any US elected official!

Compare Medicaid in each State

Each and every state may have Medicaid, but it is not all run the same. According to ASHA, “State regulations and standards differ greatly in other areas of Medicaid, including:

  • provider requirements for Medicaid participation, credentialing, and supervision;
  • documentation requirements for plan of care approval, criteria for services, authorization, and reimbursement justification;
  • Medicaid audit process and penalties for errors;
  • use of the Children’s Health Insurance Program (CHIP).”

Make sure you’re aware of these differences. For example, TEFRA is an optional waiver that not all states carry, and if they do, they don’t utilize it the same. For example in Arkansas, if a child meets the health requirements, it is accessible for families, no matter their income, on a sliding pay scale. However, the way we understand its application may be specific to Arkansas. If you move, you may not have TEFRA at all.

So how can you know what’s available to you? Use the resources below to find out more about Medicaid and how it’s different across the US!

What if your state has limited resources? There may be more out there than you know. Look around at state and local resources. There are national programs, state benefits, foundations, organizations, and grants that may help you in a bind. For example, check out this list of foundations that assist for children’s special needs.

If Medicaid matters to you, please constantly tell your elected officials. The trend is to cut Medicaid and provide those funds elsewhere. Get the facts to boost your confidence, but don’t stop communicating! Tell your legislators why Medicaid saves you! Here are some ways we could see Medicaid change in coming years.

Each link leads to a different resource we’ve found to try to help you with info or tangible resources. MSL will add to this list as we find more!

Tax Reform Bill: How to Contact AR Senators


Watch the video above to get all of the contact information to get contact information and tips.

Other helpful links:

https://www.npr.org/templates/event/embeddedVideo.php?storyId=567758536&mediaId=567762951

Senate pulls All-night Session to Vote on Skinny Repeal

The Senate is set to vote on a newly written bill, referred to as the skinny repeal, barely released an hour ago. They will vote around midnight.

Read the full text.

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Even Senators dislike it, but they may still vote it through.
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Watch live as they vote:
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Track the votes.

Senate Voted to Proceed: Now What?

Earlier today, the Senate voted 51-50 to proceed with debate over the health care bill. With only 2 opposing Republican votes, just 1 shy of what was needed, plus a tie-breaking vote from VP Pence, the motion succeeded. We now move toward serious Medicaid cuts that can’t be reversed once set into motion, and it will take all of us standing together to prevent it.

Watch how each Senator voted.

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Data shows that any bill, amendment, or revision proposed so far will be detrimental to Medicaid recipients. We (MSL) oppose the per capita caps or block grants that have been proposed because they will shift great stress to state budgets and reduce the ability to give recipients the coverage they need. We oppose ending expansion because it will result in millions losing coverage. In addition, the aforementioned bills remove essential health benefits and pre-existing condition protections, which would be detrimental to all Americans, making coverage unaffordable if not unattainable for many.

As part of the AACF statement on how this vote will affect Arkansas, Arkansas Advocates for Children and Families said: “Today’s vote shows that we have more work to do. Despite an outcry from health care professionals, business owners, families, and even governors, many Senators have decided to move forward with legislation that will destabilize the entire health care system. Too much is at risk to continue down the current path. Children with special needs, elderly enrollees, and people with chronic conditions who rely on Medicaid will lose coverage. Health care for families that were able to purchase affordable coverage, many for the first time, is also at risk.

The people have spoken—any proposal that falls short of guaranteeing everyone affordable, comprehensive coverage, is unacceptable. Now, it’s time for Congress to listen. We ask that Senator Cotton and Senator Boozman commit to voting no on any bill that endangers the health of tens of thousands of Arkansans. Anything less is breaking their promise to all of us.”

Now that we understand the ramifications haven’t changed, here’s what will happen next:

  1. The Senate will debate for 20 hours. By rules, to be fair, Republicans and Democrats get equal time of 10 hours each.
  2. The Senate will probably vote a bunch of times on amendments and such.
  3. Then the Senate will vote on a finalized bill and send it to the House.
  4. The House will vote, and if it passes, they’ll send it to President Trump.

See a flow chart.

As you can see, if you oppose Medicaid cuts, you can’t give up. Not a single Democrat voted to proceed, and we only need a few Republicans to oppose to keep any bill from moving forward. We were only one opposing vote short. Take a breath, renew your determination, and communicate in any way you possibly can!

Contact your Senator!

Email your Senators’ legislative aids!

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Stand strong!

Take Action: Graphic to Share

The news changes like the wind. Are they voting or aren’t they? Repeal and replace or repeal without replace? No matter what’s happening with them, we need to continue to make our needs and wants abundantly clear.

Many are saying that they can’t get through to Senators via phone calls. Don’t stop calling because they are counting the calls. 866-426-2631

However, social media is a great way to publicly contact your Senators, especially since they won’t post their direct email addresses.

Share this graphic with them and tag them in your posts. Use hash tags like #BCRA or #ProtectOurCare to help others see your posts!

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Medicaid Saves Lila

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This is my sweet girl, Lila. She’s active and intelligent. She loves to swing, eat blackberries, and paint. Don’t you dare turn your back on her because she’s mischievous too! She loves her friends, family, and kitty-cats. She is absolutely the most wonderful thing I’ve ever done with my life, and she just so happens to have Down Syndrome.

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She might smile a lot, but her life hasn’t been easy. Born almost a month early due to multiple complications, Lila spent some time in the NICU. She’s overcome multiple illnesses and surgeries, including open heart surgery soon after her first birthday and many others since. In fact, we have received 2 new diagnoses this year alone, and she’ll have at least one surgery.

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My husband and I are proud Arkansans. We’re educated, hard-working, tax-paying citizens. At the time of Lila’s birth, we lived in another state. Despite the fact that we both had good jobs and primary insurance coverage, we struggled to provide for her needs. When we moved back to Arkansas, Lila was significantly delayed in many areas.

IMG_6519 Our friends told us about TEFRA, a type of Medicaid funding that provides for disabled children and that requires the family to pay a premium. Our primary insurance pays first for all that it will cover, and Medicaid makes sure that Lila doesn’t go without the rest. We gladly pay a monthly fee for this essential assistance!

Lila now receives medical treatments that she needs from specialists and Occupational, Physical, and Speech therapy. She attends a school where she is loved and accepted, and they practice important skills in the classroom to prepare her for mainstream Kindergarten. Lila is constantly learning the necessary skills to be independent: speaking new words, learning to feed herself, to dress herself, and to climb stairs. One of my favorite moments was the first time I ever heard her say, “Ma Ma.” Can you imagine waiting 4 years to hear that?

IMG_2776We never expected to need Medicaid. Even though we’d paid taxes for years for Medicaid, we didn’t know that a person’s life can change drastically in a moment – a car accident, a stroke, a job loss, a cancer diagnosis, a chromosomal difference – to cause them to need Medicaid. We thought that if we worked hard enough, we could take care of ourselves and Lila. But no matter how hard we work or what we give up, we just can’t afford to provide for all of Lila’s needs. Now, because of Medicaid, Lila is thriving, and we’re not being crushed under the weight of Lila’s ever-growing medical debt. We have hope that she will continue to develop and someday be a valued, contributing member of society. We are incredibly thankful for Medicaid.

We tell everyone we can how essential Medicaid is! Lila has visited the Capitol and state lawmakers multiple times to represent herself and friends like her. Since she can’t speak much yet, my husband and I tell them how much Medicaid is literally saving lives. I can’t wait for the day that Lila will tell them herself. She brings a beauty and light to this dark world, and we will never stop fighting for her!

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How the BCRA will affect you, even if you don’t receive Medicaid

The topic of health care is not only in some ways oppressive on our minds but also overwhelming these days. Months ago, the House wrote the American Health Care Act (AHCA) in an effort to repeal and replace the Affordable Care Act (ACA), and they passed it on to the Senate. Then, the Senate must have found fault with the AHCA because they wrote their own version of the bill called the Better Care Reconciliation Act (BCRA). If the Senate passes their bill, it will have to go to the House for their approval. We have seen months (years!) of coverage on the subject of health care, and it’s downright confusing at this point.

Let’s try to clarify some of the confusion by pulling a few articles together to show what will change with the Senate health care bill, the BCRA. (The AHCA doesn’t matter if the House approves the BCRA.) This research will show that nearly everyone who isn’t extremely wealthy will be affected negatively by the bill as it stands proposed today. If you care about, or are affected by, any of the following categories, you can expect changes to come to you and your family if this bill were to pass.

1. Medicaid Funding

“[T]he Senate bill would radically restructure all parts of Medicaid—not just the expansion provided under the Affordable Care Act.” 1

“The cumulative impact: a $772 billion spending cut over 10 years, versus current law, and 15 million fewer people enrolled in Medicaid in 2026.” 2

2. Essential Health Benefits

“But another change might have more far-reaching effects: eliminating the Affordable Care Act’s ‘essential health benefits,’ or EHBs. That shift could affect almost everybody, including the 156 million Americans who receive health coverage through their employers.” 5

Here’s a rundown of what they are: 4, 5, 6

  • Outpatient care — scheduled doctor visits, (outpatient care you get without being admitted to a hospital)
  • Emergency room trips — ER visits and ambulance trips.
  • In-hospital care — All care people get as hospital patients, such as surgery.
  • Pregnancy, maternity and newborn care — before and after birth
  • Mental health and substance abuse disorder services — (this includes counseling and psychotherapy)
  • Prescription drugs
  • Rehabilitative services and habilitative services – help recovering from an injury or illness, but also treatment (therapy) for kids with autism or cerebral palsy.
  • Lab tests
  • Preventive services — vaccines, cancer screenings, etc.
  • Pediatric services — including dental and vision care for children.

3. Pre-existing Conditions Protections

“The BCRA retains the popular ACA provision that people with pre-existing conditions cannot be charged more for insurance because of their health status. However, weakened essential health benefits would hurt people with pre-existing conditions.” 1

“The Senate bill would retain some limits. It wouldn’t, for example, allow states to waive the prohibition on discriminating on the basis of preexisting conditions. But it would allow states to remove caps on out-of-pocket spending for exchange plans.” 3

4. Subsidies & Taxes

“One major difference is that the Senate bill provides subsides only up to 350% of the federal poverty level starting in 2020; the ACA currently provides subsidies up to 400%. In other words, while individuals earning up to $47,550 qualify for help under the ACA, only those earning up to $41,580 would qualify under the Senate plan. This means far fewer people will qualify for aid.” 1

Sources:

1 4 Things to Know About the Senate’s Health Care Bill

4 ways you probably didn’t know the Republican bill changes Medicaid

3  Crazy Waivers

4 What Are ‘Essential Benefits’ in GOP Health Care Bill Debate?

5 The 10 ‘essential’ benefits that could be eliminated under the GOP health care plan

6 What Marketplace health insurance plans cover

Allen

IMG_0014Allen Shimkus
Age 4
Diagnosis: Agenesis of the corpus callosum

(ACC) is a rare birth defect (congenital disorder) in which there is a complete or partial absence of the corpus callosum. It occurs when the corpus callosum, the band of white matter connecting the two hemispheres in the brain, fails to develop normally.

Allen NEEDS PT OT AND SPEECH THERAPY to teach his brain to do everything from chewing food to walking.

My 4 year old son Allen (pictured here) can not fully dress himself or walk or even speak but he has the potential to do all !!!! Please help him !!

Ari

IMG_9906My sweet boy, Ari, has had 2 shunt revisions, ETV placement and will be having a major skull reconstruction surgery in 2 months. He is still working on head control as well as feeding. He has overcome so much and he has so much further to go … without Medicaid he would not survive. Being a single parent, the support given through Medicaid help ensure that he will receive all the healthcare support that he so desperately needs. I work full time and have private insurance personally, he is also on my plan, but TEFRA helps allow for him to have continued therapy, the wheelchair that helps him participate in all community/school activities and surgeries that he needs to survive and thrive. His birthday is this week and I can’t believe he will be 4!!